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CONTINUUM: Lifelong Learning in Neurology:
doi: 10.1212/01.CON.0000394681.97867.b3
Ethical Perspectives

A Young Man With Spinal Muscular Atrophy and Impending Respiratory Arrest

Winters, Janine Penfield MD; Weisleder, Pedro MD, PhD

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Abstract

From a statutory standpoint, the decision-making capacity of adolescents differs significantly from that of adults because adolescents are considered to lack the experience and judgment necessary to make legally binding decisions. Furthermore, in the case of minors, the principle of protection of life tends to outweigh the principle of autonomy. Here we present the hypothetical case of a 16-year-old boy with spinalmuscular atrophy type II who was admitted to the intensive care unit for severe respiratory distress. We focus on the tension that developed among the patient, his parents, and his physicians when the need for emergency mechanical ventilation became apparent. We review the legal and ethical premises under which adolescents are permitted to make legally binding decisions, ie, the emancipated minor and the mature minor doctrines. Finally, we discuss the concepts of protectionism and liberationism as they apply to adolescents' decision-making capacity.

© 2011 American Academy of Neurology

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